Balancing Realities

After an extraordinary five months, many aspects of life are spinning back into some sort of normality. For most people there might be some minor changes to how they live, work or socialise, but I get the impression that some of the urgency and sense of shared purpose from the earlier weeks of the lockdown has faded.

As a disabled person who’s in the ‘extremely clinically vulnerable’ group, I’ve been shielding at home for the last five months. For the first four, Erik, Claire and Leftwing Idiot provided all my care. In the last few weeks this team’s expanded and new support workers, have joined our Spaceship crew, while Erik’s returned to his home in Spain.

These aren’t the only changes to my routine since July. I’ve ventured out a few times and had a few visits – all have been outdoors, in my garden, and socially distanced – and when I’m outside, my PA and I always wear masks.

A photo of Jess Thom a white woman and her Personal Assistant Erik a brown man out and about on a sunny day. Both are wearing masks and looking at the camera - Erik is doing a thumbs up gesture.

I’ve been out four times so far and I’ve found it strangely thrilling seeing them afresh. Before lockdown I led a busy, active life and was lucky to regularly travel throughout the UK and abroad, but in many ways, I’ve enjoyed being at home. My trips out would’ve seemed mundane at the start of the year – now they feel packed with detail, which in some ways feels quite overwhelming.

I’m really enjoying these local outings, but I’ve also become very accustomed to the safety and routine of life in our spaceship. I also feel vulnerable in a way I’m not used to feeling. I’ve never really worried about dirt or germs or being around other people, and while everyone’s relationship with these things will have been affected by the pandemic, for people with extra risk factors, the stakes are particularly high.

It seems to me that there’s a growing gulf between those who have to consider every action, and those for whom life can resume with some minor modifications. I’ve realised it’s not staying at home that feels isolating, but the gap between our experiences.

While I don’t want people to change what they are doing there are ways of supporting and showing solidarity with those of us who are at extra risk. So, here are the things I’d like my friends, family and the wider community to be aware of:

1. Many People Are Still Shielding – While shielding has technically been paused, many of us who’ve been identified as being at increased risk will still be being very cautious. So please can you recognise this and act with thought and care, for example by keeping your distance in the park or checking about mask preferences before you visit.

2. Give Space and Time – Remember that people with certain impairments or mobility aids will find it harder or impossible to maintain social distance if space is tight. As a wheelchair user I can’t just step off the pavement, which means I’m reliant on the consideration of others. An example: a jogger approaching from behind squeezed past me in the park the other day, breathing heavily onto my head. I doubt he would have given this a moment’s thought, but it left me feeling exposed. Making space wherever possible isn’t just about reducing the physical risks but also about how safe and confident we feel when we’re out and about.

3. Make Invitations Mindfully – If a friend or family member is at increased risk, do check in with them. When inviting them to visit or meet up, take care to describe the location and how many other people are likely to be present. I found myself feeling surprisingly prickly when I was asked what my plans for the day were recently. This was of course a harmless question, but with my options significantly reduced, it made me feel twisted up inside.

4. Avoid Assumptions – Many sick, disabled or shielding people lead full active lives, have jobs and families I’ve seen comments online in recent months that suggest some people assume otherwise, and see those shielding as having lives that are somehow lesser and therefore the disruption and restriction to them is less significant. Please make sure you’re not one of these people, and that your words are free of assumptions or judgement.

5. Don’t Make Me Ask – Offer information that might be important for a shielding person to know before meeting or visiting them, without waiting to be asked. For example, say if you’ve had contact with people who work in higher risk environments like a hospital, or if you’ve been on holiday, or to a public event. Doing this may still feel a bit awkward, but a clunky, awkward conversation is way better that risking someone’s health. This is about enabling me, and others in similar circumstances, to make informed choices.

6. Trust in Lived Expertise – In recent weeks there have been times when I’ve felt a pressure to explain my additional risk factors to justify the steps I’m taking to stay safe. Disabled, sick or older people don’t owe anyone an explanation. Please trust in our knowledge of our bodies and our requirements. If someone asks for something to be done in a particular way, please respect this and remember it for future occasions.

While I’ve struggled with how to balance my personal risks and the re-opening of the world, I’ve also experienced many acts of practical solidarity and care and I’ve noticed and appreciated each of these. These include, for example, guests who bring their own cups to the gazebo that Erik put up in the garden.

While little can be done to change someone’s underlying health conditions or increased susceptibility to COVID we can all take action to make sure our communities are set up so they are as safe and inclusive as they can be.

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